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Epilepsy and Long-Term Survival The most frightening fact about epilepsy is that people with epilepsy have a higher chance of dying compared to others their age. It's one of the main reasons we want parents
Regardless of their disabilities, all children eventually become adults – physically and legally. Transition planning is about looking ahead at your child’s future life, setting goals, and determining what supports and services will be needed
Regardless of their disabilities, all children eventually become adults – physically and legally. Transition planning is about looking ahead at your child’s future life, setting goals, and determining what supports and services will be needed
Friday, May 12, 2023 5 pm Pacific Time | 6 pm Mountain Time | 7 pm Central Time | 8 pm Eastern Time Free admission More than 500,000 children in Canada and the USA have
Can new technology bring hope to children who have drug-resistant epilepsy? The Pediatric Epilepsy Surgery Alliance was thrilled to co-host the USA Premiere of Seizing Hope: High Tech Journeys in Pediatric Epilepsy at the 2022
The financial aspects of caring for a child or adult with special needs can be daunting. This workshop will provide you with an overview of what you need to do, including: How to address primary
When should you consider epilepsy surgery for your child's rare genetic epilepsy? Join Dr. Ahmad Marashly, Medical Director, Pediatric Epilepsy Surgery Program, Johns Hopkins Hospital, and Monika Jones, founder and Executive Director of the Pediatric Epilepsy
Can children with drug-resistant seizures caused by a rare genetic epilepsy have epilepsy surgery? New research and clinical experiences say that the answer is yes. Come hear about when and why you should consider epilepsy
How do they do it? How do other parents manage the many challenges after their child has epilepsy surgery? Do you wish you had a “blueprint” of ideas and tools others have found effective? Our
Meet other families on the pediatric epilepsy surgery journey and celebrate our community at the beautiful French Embassy in Washington, DC! This event launches our Give for Hope™ campaign to raise funds for Dreams for
We are often asked by families, “What are good goals for my child’s IEP after epilepsy surgery?” Or “How do I know if my child is on track to meet their IEP goals?”
The Flynn family, Christmas Day 2021 Guest Blog Post: Elizabeth Flynn "About six years ago on a family vacation to Park City, my three-year-old sister Margaret had her first seizure. I can
Cecile Dame and her son earlier this week "I still remember the feeling of entering an endless night after learning the diagnosis of infantile spasms for our son, followed by the despair
October is National Disability Employment Awareness Month (NDEAM). This national campaign aims to raise awareness about disability employment issues and celebrate the contributions of employees with disabilities. This year’s theme is “America’s Recovery:
Kelly and Annie Sorenson knew something was different about their son, Boston, shortly after he was born. He was small and having a hard time breathing. But even after he was discharged from the
Participating in research is a powerful way to help our community understand epilepsy surgery and its effects. We have three research studies for parents, children, and adults in our community. Please consider participating!
How to get a 1:1 aide for your child after epilepsy surgery Children with epilepsy often have behavior issues or safety needs that require them to have more direct supervision than a typical child
Recently, a young adult who had a big epilepsy surgery when she was a child asked on social media about ABLE accounts. After I pulled together some links and resources for her, I
Raising a child with complex medical needs can be expensive. You may have to pay for doctor’s visits, hospital stays, medications, and more. While you are struggling to care for your child, you
Early data from our Global Pediatric Epilepsy Surgery Registry shows that 90% of children after epilepsy surgery have individual education plans in school. If your child has an individual education
Adults who had hemispherectomy surgery in childhood enjoy friendship and fun at our 2019 family and professional conference. All young people must transition from pediatric to adult doctors at some point. Ideally,
While many schools have been closed for the past year, or at least part of it, that should not mean a loss of instruction or services for your child. None of the executive
Now that schools are reopening across the country, it's important that all youth after epilepsy surgery have plans in the event of an emergency even if their epilepsy is well controlled. Emergency plans
A major concern for many families with students who have had brain surgery for epilepsy is how to prepare for independent living, especially when schools and transition programs are closed (or limited) for in-person
What you need to know Laser ablation is a relatively new surgical method used to treat epilepsy It is mainly used to treat small, focal lesions caused by hypothalamic hamartoma,
A note from our CEO. 2019 was a banner year for us. We launched our global pediatric epilepsy surgery registry, convened an important patient-centered research meeting, held our biggest family conference yet,
We know that some members of our community may be experiencing financial hardship that affects their ability to pay for food, shelter, rent, or other necessities right now because of the COVID-19 pandemic.
There are many therapies and exercises you can do at home to help with your child's development. Be sure to discuss any home-based program with your child's doctor before starting them. Here's a list
Published March 24, 2020 Edited April 18 and June 28, 2020 A Message To Our Community We are grateful for our small but mighty community; your health and wellbeing is our
Posted October 8, 2019 • Updated October 8, 2020 Today is World Sight Day, a global day of awareness to focus attention on blindness and vision impairment. Here we share some resources for you
